"Many women are not able to travel and are forced to continue pregnancies, despite financial and health risks. We must remember them, stand up for them and continue to fight for the simple dignity of having control over our own bodies." - Dr. Cheryl Hamlin
If people who are literally going to die if they don’t find money for their healthcare can’t raise it with the economy bring so awful (one is @Tinu who could really use the help), then what chance do I have to escape abuse and pay for all the steps to freedom?
But if ask for volunteers in #advocacy to #help or a place to stay, it just just doesn’t work so there’s no spare money but even with this economy people struggling with a spare room would rather not help or would rather advertise for a stranger? I can pay you rent so we’re helping each other! I’m a stranger for a lot of you but not all & I have people who can vouch for me not being a psychopath! 👍
I would really appreciate people to help because I live in a safe Labor seat so accessing services is impossible in many cases because the books are closed or they don’t exist. I’ve had so many people in rich catchments tell me it isn’t so because they have the red carpet rolled out. I challenge them to call the local council and they won’t…
I’ve contacted the local and federal MPs 3 times and they don’t care. Some senators have been okay but can’t do much because they aren’t in power.
There’s no funding. I’ve been waiting for advocacy services for 2 years & no DV orgs help the disabled or chronically ill. I’ve tried them all & have emails for proof (a lot of people don’t understand that most services cease to exist as soon as you’re disabled). It got so bad I’ve even asked a priest for help (no help). He just victim blamed. Maybe I should try protestants?
Am I just not asking the right way? If you can word things better #volunteers are welcome.
"Jaime Seltzer, #MEAction’s Scientific Director, has been selected for TIME100 Health 2024, TIME’s new annual list of 100 individuals who most influenced global health this year! This is a huge honor based on years of work fighting for equity for people with ME.
... We want to say thank you to the community that has enabled this work"
Through #MEAction, Seltzer is helping to spearhead a major campaign to improve ME/CFS education, diagnosis, and treatment. Thanks to Seltzer’s efforts, staff at big-name institutions including Emory, Brown, and Georgetown are working with #MEAction to improve education programs and treatment plans related to ME/CFS. Those efforts build on a partnership Seltzer made last year with the Mayo Clinic, through which she helped revamp the health system’s public-facing ME/CFS fact sheet and designed an algorithm to help doctors better diagnose and treat patients.
"Teach ME Treat ME will be here in the next few weeks! While many of you are preparing to host medical education events, we know that thousands of you will be participating from home!
We are beyond excited to share the Show Up From Home Toolkit! This toolkit lays out an array of ways you can take action from home based on your energy level."
Jaime Seltzer posted a thread about #TeachMeTreatME on Bluesky:
"The Teach ME Treat ME campaign is turning out to be an incredibly successful campaign for Millions Missing this year! Local and state groups are doing in-person medical education events; #MEAction is also engaging in longer-term partnerships to create products to transform ME/CFS care. (1/6)"
Only 7% of U.S. Congress members are women with minor-age children, despite composing 18% of the country’s population. A Pew Research Center poll last year showed almost half of American women say family obligations are the reason men outnumber women in office. Now, female legislators seeking to correct this imbalance are advocating for policies that accommodate mothers in politics. Read more from The Christian Science Monitor.
Awhile back I went to a specialist for unexplained & painful lower leg swelling. His diagnosis?
“Maybe your legs are just getting fat.”
Horrified…I asked how many people gain weight ONLY in their calves. He shrugged me off. A 🧵 on knowing your body & advocating for care
This doctor did NO tests before deciding it was weight gain. Wouldn’t discuss it with me further & wouldn’t permit me a second opinion. I went home completely dejected and also worried because I KNEW something was wrong.
For the next few days I elevated my legs as much as possible and tried to gently massage them to see if it helped. They just kept getting bigger. Eventually they started weeping (fluid was seeping out of my skin) and my ankles were dislocating from the pressure.
So I went to the ER. I was actually nervous about going because I could only imagine what that doctor had put in my chart. Thankfully I had a doctor who took the swelling very seriously and ordered a wide range of tests (and immediately put me on bed rest to protect my ankles)
Turns out it was a combination of third spacing from my MCAS (when the fluid doesn’t stay in the vascular system & leaks out into the tissues - can be a big issue if you have POTS as well) and low albumin. Dangerously low albumin.
Needless to say I was suffering from malnutrition due to my extensive GI issues and that was causing the swelling. It most definitely wasn’t weight gain. I was underweight with the exception of my legs.
I never knew that low albumin could cause painful swelling like that - nor did I even think that I was suffering from malnutrition. But with both POTS & MCAS it makes sense.
Our digestive systems are controlled by the autonomic nervous system (the system malfunctioning when you have POTS) so it’s not uncommon to experience vomiting, diarrhea & other gastric complaints.
MCAS only compounds the issue by limiting the foods you can tolerate and also causing vomiting and diarrhea. The two conditions make getting adequate nutrition a challenge - especially if you’re on the severe end of the spectrum
I’m very grateful to the doctor who figured it out and helped me get homecare so I could get proper nutrition & stay off my feet while the swelling was at its worst. But it took a LOT of courage to go to the ER after being so rudely dismissed.
This is a lesson in the importance of knowing your own body & having an advocate with you whenever possible. I KNEW something serious was wrong but I had no one with me to challenge the first dismissive doctor. And he was completely unwilling to listen to me.
Don’t ever feel like you can’t get a second opinion or go to a different hospital if you feel you aren’t being taken seriously. And don’t ever apologize for advocating for your health. If you don’t have someone who can go with you - try & phone or video a friend.
Lastly can we please start listening more to patients? We know our bodies best and when you dismiss us it causes not only physical damage - but emotional damage too. You make it harder for us to seek care in the future.
Patients shouldn’t be dismissed without any tests being run. Had I not gone to the ER I could have ended up with life threatening cardiac issues from the electrolyte & fluid imbalance. A simple lab test would have confirmed the diagnosis had the first doctor cared to do them.
This experience was also an excellent reminder of the far reaching effects of dysautonomia & MCAS. It’s important to be as educated as possible in these conditions & the strange downstream complications they can cause.
And remember dismissal & gaslighting is often far worse for marginalized individuals. There’s a LOT of bias in medicine. If you’re someone in a position of privilege please call it out when you see it - and offer to be an ally to those who need support. Allies save lives
Doc: Are you sure? You look young. Maybe it was your appendix?
Me: I know the difference between my appendix and my WOMB.
Doc: Orders pregnancy test anyways
We really need to discuss how AFAB patients get treated by many doctors. If you need to do a pregnancy test on everyone as a matter of course - then just do the test. But don’t waste time arguing with me about whether I know the difference between an appendix and my LITERAL womb when I’m having a life threatening cardiac emergency.
"On Friday, March 15, people with Long Covid and their allies gathered in front of the Lincoln Memorial in Washington D.C. for the Long Covid D.C. (LCDC) protest to commemorate Long Covid Awareness Day."
"As we approach World ME Day 2024, we invite you to be a part of a new short film that aims to shed light on the reality of Myalgic Encephalomyelitis (ME)"
I see far too many chronic illness patients being dismissed from the ER for “faking”. Is there not a duty to run tests to ensure something isn’t missed before discharging someone as a fake? Given the consequences could literally be their life?
This happened to me years ago -
I had major OB GYN surgery and a week later was getting worse not better. Weak, in pain, swollen, loss of appetite etc. Went to the ER and was treated like a “nuisance” and asked what I “expected” after major surgery. I tried to explain I expected to improve a little each day - and I was clearly decompensating.
They decided I was faking and sent me home. This repeated 3 times over the course of a week - each time I was sent home without any tests.
Finally my then boyfriend took me in for a 4th time - literally carrying me to triage because I could no longer stand up. They got angry and said “we’ve already told her there’s nothing we can do.” He said he wasn’t taking me home to die. He demanded they run tests. The situation escalated but they finally acquiesced to the most basic blood work and an ultrasound. I’m incredibly fortunate they listened to him - and incredibly angry it took a man causing a scene to get me care.
Turns out I had a hugely elevated white blood count, a ferritin of zero and a hemoglobin of 63. I had a massive infected abscess in my abdomen that had been caused by an internal bleed left unchecked for weeks. I was rushed to emergency surgery and needed multiple rounds of blood transfusions and spent weeks in the hospital.
Had I gone home - I more than likely would have died. Had I been alone - I would have died. It should never be this way and from what I’m hearing from other patients it’s only gotten worse since Covid.
Please listen to your patients. We KNOW our bodies. Listen to women & marginalized individuals… don’t make us bring someone else to tell our story. Listen to people who come back over and over again - they clearly need help. Have some compassion and don’t assume someone is faking just because you don’t see an obvious issue.
Hello, everyone! My name is Ray and my pronouns are he/him. I'm a thirty year old pansexual trans male autie, hence my username. I'm also an anarcho-communist intersectional feminist.
My special interests include but aren't limited to: Japanese pop culture, pop music, social justice and video games.
I hope to get to know and befriend other users who share similar interests and beliefs.
Check out these #LightPollution PSAs made by DarkSky Oregon. Each conveys an important topic through clever and creative animations. (The 30-second spots are also running locally on television to reach a larger audience.)
How & why #authors should investigate speaking at local Womens Institute groups.
I encourage fellow authors to explore speaking at local groups. They are a powerful platform not just for income, but for raising awareness and connecting with communities.
"The continuing fight for Long COVID and Myalgic Encephalomyelitis patients"
"Billy Hanlon, who has been living with ME/CFS since 2017, spoke with the Amsterdam News in a Q&A about Long COVID, ME/CFS, and ongoing advocacy efforts. He is the director of advocacy and outreach for the Minnesota ME/CFS [Myalgic encephalomyelitis/chronic fatigue syndrome] Alliance…"